by Terre Krotzer | Jul 28, 2021 | Blog, Expecting A Child, Medical Professionals, Parenting A Child, Surgery, Trisomy 13, Trisomy 18
From the SOFT 2021 Virtual Conference Professionals Panel. Interdisciplinary Care of Children with Trisomy 13 and 18with Dr. Nicole Birge, MD, Medical Director of the Neonatal Intensive Care Unit at Children’s Omaha and Dr. Lois Starr, MD, PhD.by SOFT | Mar 24, 2021 | Blog, Family story, Stories
“Whenever one of us needs a pick-me-up, we can always count on Tabitha to respond to snuggles with affectionate smiles. Although Tabitha may not contribute to society in the same way as her siblings, the lives she touches are forever changed for the...by SOFT | Mar 2, 2021 | Blog, Family story, Stories
We see life through a completely new lens, and we know she isn’t an accident, a fluke, or a clump of cells – but a valuable part of God’s beautiful plan, and a daily reminder of what’s truly important. In the Fall of 2018, we learned we were being blessed with...by Terre Krotzer | Jul 19, 2020 | Blog, Expecting A Child, Medical Professionals, News, Parenting A Child, Resources, Surgery, Trisomy 13, Trisomy 18
Dr. Nicole Birge & Dr. Meaghann WeaverHeartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18. From the SOFT 2020 Virtual Conference. About Dr. Nicole Birge:Nicole Birge M.D. is the Medical Director of the Neonatal...by Peg Bailey | Mar 1, 2020 | Expecting A Child, Medical Professionals, News, Parenting A Child, Related Disorders, Resources, Surgery, Trisomy 13, Trisomy 18
A new day is dawning for our kids with heart issues. For years many of our families have had life saving surgeries denied simply because of their child’s diagnosis. Dr. James Hammel at Children’s Hospital in Omaha is looking beyond the label, giving our...Director of Social Media
Board of Directors
Akaiya – trisomy 18 (19 years old)
Board of Directors
Mark – Trisomy 13 (angel)
Gina and Glenn Csontos have four children. Mark (trisomy 13) has been an inspiration to their family. Gina and Glenn have been members of SOFT since 1995. Gina is a Neonatal Nurse Practitioner and has the opportunity to work with infants newly diagnosed with trisomy. They are bilingual and speak and write in Spanish. Gina has communicated with many Spanish speaking families on behalf of SOFT.
Board of Directors
Madison – Trisomy 18
Angie and Micah McCauley are the proud parents of two beautiful daughters, Madison (trisomy 18) and Emma. Angie has unique skills to help things run smoothly and efficiently. They want to continue to share their experiences and find opportunities for families to make connections with medical professionals and in education. They strive to spread awareness, to grow and expand our outreach, to provide accurate information on trisomy, while maintaining the family oriented value and goals of SOFT.
MD, MPH
Retired, General Pediatrics
Ph.D
Professor
Southern Illinois University
MD
Assistant Professor
Yale University School of Medicine
Pediatric Cardiology
MD
Professor of Pediatric Otolaryngology
Mott Children’s Hospital
University of Michigan
Professor of Pediatrics
Director of Medical Genetics
Saint Louis University
SSM Health Cardinal Glennon Children’s Hospital
MD Anesthesiologist
Vice President – Member Support
Medical Advisory Board
Renae actively engages through the Social Media Committee, oversees State Proclamations during Trisomy Awareness Month (TAM), and is chair for SOFT’s state representatives. She holds the position of SOFT treasurer, bringing with her many years of administrative expertise.
Josh possesses significant experience in the field of non-profit leadership, organization, and development. Josh contributes his talents to the SC Baptist Convention. Notably, he played a key role in the revamping of SOFT’s mission statement and vision framework, furthering the organization’s overarching goals and objectives.
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